Lost for
Words
Lost for Words
support for cancer patients and their families throughout treatment and afterwards. We thank all those patients, families and professionals whose support and advice made this publication possible.
ORIGINAL TEXT
Dr Robert Buckman, Medical Oncologist and Lecturer in Communication
CONTRIBUTORS
Ciara Lilly, Cancer Information Service Nurse
Alison Wills, Cancer Information Service Nurse
Irish Oncology and Haematology Social Workers Group
EDITOR
Tara Droog
SERIES EDITOR
Joan Kelly, Nursing Services Manager
First published by the Irish Cancer Society in 2003.
©Irish Cancer Society 2003, revised 2005, 2010, 2012, 2104 Next revision: 2017
Product or brand names that appear in this booklet are for example only. The Irish Cancer Society does not endorse any specific product or brand.
All rights reserved. No part of this publication may be reproduced or transmitted, in any form or by any means, electronic or mechanical, including photocopying, recording or any information storage and retrieval system, without permission in writing from the Irish Cancer Society.
ISBN 0953236901
4 Introduction
How to talk to someone with cancer
5 You’re not alone
7 Why talk? Why listen?
9 Obstacles to talking
10 How to be a good listener
17 Understanding what your friend is facing
19 How to help – a practical checklist
23 Conclusion
Support resources
25 Who else can help?
26 Irish Cancer Society services
31 Useful organisations
How to talk to someone with
cancer
You’re not alone
I bumped into John in the lobby of the hospital. I was a student and my family and John’s family had been friends for as long as I could remember. Now John’s mother had been admitted to hospital and was found to have cancer of the kidney. John was sitting downstairs in the lobby looking very upset. I asked him whether he was on his way up to see his mother. ‘I’ve been sitting here for half an hour,’ he said. ‘I want to go and see her, but I’m stuck. I don’t know what to say.’
That story explains how most of us feel when someone we love has been told that they have cancer. It is important to know that what you are feeling is normal and that you are not alone.
We all feel stuck and helpless, maybe lost for words, when a friend of ours receives some bad news. We all feel that we don’t know what to say. To make things worse we probably think that there are things we should be saying or doing which will make it easier for the person with cancer – if only we knew what they were.
There are ways to overcome those feelings so that you can give practical and useful support. To put it simply, if you want to help but don’t know how, then this booklet is for you.
There are no magic formulas, phrases or approaches which are ‘the right thing’ to say or do during this difficult time. There isn’t a ‘right’ set of words or attitudes that will always help, that everybody else knows and you don’t. If you really want to help your friend, then your desire to help is the most important factor.
Introduction
This booklet has been written to help you support someone close to you who has cancer. Many people find it difficult to talk to someone who has cancer, or to know how to give support. This booklet gives advice and tips that might help you to feel more confident about supporting your friend or relative. If reading this book helps you, why not pass it on to family and friends who might find it helpful too. At the end of the booklet there is a list of books you may find useful to read. There is also a list of websites and special groups that can help and support you at this time. The National Cancer Helpline 1800 200 700 can also give information on all aspects of cancer and people who can help. It is open Monday to Thursday 9am–7pm and Friday 9am–5pm. Or you can also visit a Daffodil Centre if one is located at your hospital. See page 27 for more details.
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There is no ‘right’ thing to say. What is most important is your desire to help.The second point is that most of us – like John in the story – feel that we don’t know what to say. But the important bit is not what we say – it’s that you are there, and how you listen. In some respects, the single most important thing that you can do for your friend or relative with cancer is to listen. Once you’ve learned the few simple rules of good listening, then you’ll already be of great help and support – and everything will improve from there. The secret is to start – and starting means learning how to be a good listener, and that begins with
understanding why listening and talking are so valuable.
The word 'cancer'
Before we move on to the specific details of listening and supporting, we should recognise the particular problems created by the word ‘cancer’. For most people, when they are told they have cancer, the diagnosis seems to bring a unique sense of dread and foreboding. The patient’s relatives and friends, and the doctors and nurses looking after the patient as well, often share feelings like these. Many people with cancer can be cured, and that number is increasing all the time.
Nevertheless, the word ‘cancer’ has a more devastating effect than most other diagnoses. That is why a booklet like this is needed more often when the diagnosis is cancer than when it is any other illness.
Why talk? Why listen?
So you want to help, but you’re not sure what to do for the best. Perhaps the most logical place to start is to look at what you’re trying to achieve. There are basically three excellent reasons for talking and listening and they are:
1 Talking to each other is the best way to communicate
There are, of course, many different ways of communicating – kissing, touching, laughing, frowning, even ‘not talking’. However, talking is the most efficient and the most specific way that you have of communicating. It is by far the best way of making any
communication clear between you and another person. Other methods of communication are very important, but for them to be of use you usually have to talk first.
2 Simply talking about distress helps relieve it
There are many things that a conversation can achieve and there are many reasons for us to talk. There are obvious ones – such as telling the children not to touch the hot stove, telling a joke, asking about the football results and so on. But there are also less obvious reasons for talking, and one of these is the simple human desire to be listened to. Often, particularly when things go wrong, people talk in order to get what is bothering them off their chest, and to be heard. This serves a useful function. It releases a bit of stress, and human beings can only stand so much stress. You can provide relief for a sick person by listening and by simply allowing them to talk. That in turn means that you can help your friend even if you don’t have all the answers.
In fact, ‘good listening’ is known to be helpful in itself. A research study took place in the United States in which a number of people were taught the simple techniques of good listening. Volunteer patients then came to see them to talk about their problems.
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One of the greatest services you can do for your friend or relative is to listen to their fears and stay close when you’ve heard them. By not backing away, you show that you accept and understand them. This will, in itself, help to reduce the fear and the shame, and help the person get their sense of perspective back.
So for all these reasons, you have everything to gain and nothing to lose by trying to talk to, and listen to, someone who has just been told that they have cancer. Starting a conversation in these
circumstances often feels very awkward and embarrassing, but there are ways to overcome obstacles to conversation.
Obstacles to talking
There are six major kinds of obstacles to free communication between you and the person who is ill. They are:
The listeners in this study were not allowed to say or do anything at all. They just nodded and said ‘I see’ or ‘tell me more’. They were not allowed to ask questions, or say anything at all about the problems that the patients described. At the end of the hour, almost all of the patients thought they had got very good help and support – and some of them rang the ‘therapists’ to ask if they could see them again, and to thank them for the therapy.
It is always worth remembering that you don’t have to have the answers, just listening to the questions will help a bit.
3 Try not to shut out your thoughts
It can be hard to know what to say when someone close to you is diagnosed with cancer. It may seem best to pretend that everything is fine and carry on as normal. You may not want to add to the person’s worry by seeming afraid or by saying the wrong thing.
Research from studies done by psychologists talking to people with terminal illness has shown that conversations between the people who were ill and their relatives and friends did not create new fears and anxieties. In fact the opposite was true; not talking about a fear makes it bigger.
People who have nobody to talk to are more likely to be anxious and depressed. Research has also shown that when people are seriously ill one of their biggest problems is that other people won’t talk to them. Feelings of isolation add a great deal to their burden. Often, if a major anxiety is occupying someone’s mind, the person finds it difficult to talk about anything else at all.
One of the reasons that people bottle up their feelings is shame. Many people are ashamed of some of their feelings – particularly of their fears and anxieties. They are afraid of something but feel that they are not ‘supposed’ to be, and so they become ashamed of themselves.
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People who have nobody to talk to are more likely to be anxious and depressed.These seem like major barriers, but don’t let that alarm you. There are ways of making yourself available for listening and talking without overwhelming your friend or relative. You can work out whether they need or want to talk or not by asking one or two simple questions. For example: How are you? Did you get a shock when you heard the news? Is there anything I can do?
1 The person who is ill wants to talk but you don’t.
2 The person who is ill doesn’t want to talk but you do.
3 The person who is ill wants to talk, but feels they ought not to.
4 You don’t know how to encourage the person with cancer to talk.
5 The person who is ill appears not to want to talk, but really needs to.
Generally there should be a comfortable amount of space between you and the person you are talking to. A longer distance makes
conversation feel awkward and formal, and a shorter distance can make the other person feel hemmed in, particularly if they are in bed and so cannot back away. Try to make sure there are no desks, bedside tables and so on between you. Again, that may not be easy, but if you say something (such as ‘It’s not very easy to talk across this table, can I move it aside for a moment?’), it helps both of you.
Keep looking at the person while they are talking and while you talk. Eye contact is what tells the other person that the conversation is solely between the two of you. If, during a painful moment, you can’t look directly at each other, at least stay close and hold the person’s hand or touch them if you can.
2 Find out if the person who is ill wants to talk
It may be that they are simply not in the mood to talk to you that day. It’s also quite possible that they may want to talk about quite ordinary ‘little’ things, such as television programmes or sports events or other everyday subjects. Try not to be offended if that is the case.
Even if you are mentally prepared for a major conversation with your friend, try not to be put off if they do not want that at this particular moment. You may still do them a valuable service by simply listening and being there while they talk about everyday matters – or perhaps don’t talk at all. If you’re not sure what they want, you can always ask ‘Do you feel like talking?’. This is always better than launching into a deep conversation (such as ‘Tell me about your feelings’) if they are tired or have just been talking to someone else.
3 Listen and show you’re listening
When your friend or relative is talking, try to do two things. Firstly, listen to them instead of thinking of what you’re going to say next, and
How to be a good listener
Basically, good listening can be divided into two parts – the physical part and the mental part. A lot of the most awkward gaps in
communication are caused by not knowing a few simple rules that encourage free conversation.
1 Get the setting right
This is important, and it’s worth getting the details correct at the start. Get comfortable, sit down, try and look relaxed even if you don’t feel it. Try to signal the fact that you are there to spend some time (for instance, take your coat off!).
Keep your eyes on the same level as the person you’re talking to, which almost always means sitting down. As a general rule, if your friend is in hospital and chairs are unavailable or too low, sitting on the bed is better than standing.
Try and keep the atmosphere as private as possible. Don’t try to talk in a corridor, or on a staircase. That may seem obvious, but often conversations go wrong because of these simple things.
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Keep looking at the person while they are talking and while you talk.>>>
Try and keep the atmosphere as private as possible.>>>
Talking about bad news
You might find yourself saying nothing at all because you don’t know what to say. As a result, you might withhold information from a family member or indeed your relative or friend with cancer. Try to be as open and honest as you can, even when dealing with a difficult subject like cancer.
secondly, show that you’re listening. To listen properly, you must be thinking about what your friend is saying. You should not be rehearsing your reply. Doing that means you are anticipating what you think they are about to say, and not listening to what they are saying.
You must try not to interrupt. While they are talking, don’t talk yourself but wait for them to stop speaking before you start. If they interrupt you while you’re saying something with a ‘but’ or ‘I thought’ or something similar, you should stop and let them continue.
4 Encourage the person with cancer to talk
Good listening doesn’t mean just sitting there like a running tape-recorder. You can actually help the person who is ill talk about what’s on their mind by encouraging them. Simple things work very well. Try nodding, or saying things like ‘Yes’, ‘I see’ or ‘What happened next?’ These all sound simple, but at times of great stress it’s the simple things that help things along.
You can also show that you’re hearing, and listening, by repeating two or three words from the person’s last sentence. This really does help the talker to feel that their words are being taken on board. You can also repeat back to the talker what you’ve heard. This is partly to check that you’ve got it right, and partly to show that you’re listening and trying to understand. You can say things like ‘So you mean that...’ or ‘If I’ve got that straight, you feel...’
5 Don’t forget silence and non-verbal communication
If someone stops talking, it usually means that they are thinking about something painful or sensitive. Wait with them for a moment and then
ask them what they were thinking about. You can hold their hand or touch them if you feel like it. Don’t rush it, even if the silence does seem to last for a long time.
Another point about silences is that sometimes you may think ‘I don’t know what to say’. This may be because there isn’t anything to say. If that’s the case, do not be afraid to say nothing and just stay close. At times like this, just being there, a touch, or an arm round a shoulder can be of greater value than anything you say.
Sometimes, non-verbal communication, such as the way a person holds their body or how they move, tells you much more about them than you expect. Here’s one example from a doctor’s experience:
Recently, I was looking after a middle-aged woman called Mary who seemed at first to be very angry and didn’t want to talk. I tried encouraging her to talk but without much success. During one interview, while I was talking, I put my hand out to hers – rather tentatively because I wasn’t sure it was the right thing. To my surprise, she seized it, held it tightly and wouldn’t let go. The atmosphere changed suddenly and she instantly started talking about her fears of further surgery and of being abandoned by her family. The message with non-verbal contact is ‘try it and see’. If, for example, Mary had not responded so positively, I would have been able to take my hand away and neither of us would have suffered any setback as a result of it.
6 Don’t be afraid of describing your own feelings
You’re allowed to say things like ‘I find this difficult to talk about’ or ‘I’m not very good at talking about...’ or even ‘I don’t know what to say’. An acknowledgement of the feelings that are usually quite obvious to both of you (even if those feelings are yours rather than your friend’s) can dramatically improve the atmosphere. It usually reduces the feelings of awkwardness or embarrassment that we all feel from time to time. It’s remarkable how much this can improve communication.
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You can help the person who is ill talk about what’s on their mind by encouraging them.>>>
Don’t be afraid to say nothing and just stay close.>>>
To listen properly, you must be thinking about what your10 Respond to humour
Many people imagine that there cannot possibly be anything to laugh about if you are seriously ill or dying. However, they are missing an extremely important point about humour. Humour serves an important function in our way of coping with major threats and fears. It allows us to get rid of intense feelings and to get things in perspective. Humour is one of the ways human beings deal with things that seem too
impossible to deal with.
If you think for a moment about the commonest subjects of jokes: mothers-in-law, fear of flying, hospitals and doctors, sex and so on. None of those subjects is funny in themselves. An argument with a mother-in-law, for instance, can be very distressing but arguing with the mother-in-law has been an easy laugh for the stand-up comedian for centuries. We all laugh most easily at the things we cope with least easily. We laugh at things to get them in perspective, to reduce them in size and threat.
One woman in her early forties needed to have a tube (catheter) in her bladder as part of her treatment. While she was in hospital she carried the drainage bag like a handbag and used to say loudly that it was a shame nobody made a drainage bag that matched her gloves. Out of context that may sound ghoulish, but for this particular woman it was a method of dealing with a very distressing problem. It showed her bravery and desire to rise above her physical problems. For her it was very much in character.
Laughter can help people to get a different handle on their situation. If your friend wants to use humour – even humour that to an outsider might seem grim – you should certainly go along with it. It’s helping them to cope. This does not mean that you should try and cheer them up with a supply of jokes. You can best help your friend by responding sensitively to their humour, rather than trying to set the mood with your own.
7 Make sure you haven’t misunderstood
If you are sure you understand what your friend means, you can say so. Responses such as ‘You sound very low’ or ‘I imagine that must have made you very angry’ are replies that tell them that you have picked up the emotions they have been talking about or showing. But if you’re not sure what they mean, then ask: ‘What did that feel like?’, ‘What do you think of it?’, ‘How do you feel now?’ Misunderstandings can arise if you make assumptions and are wrong. Something like ‘Help me understand what you mean a bit more’ is quite useful.
8 Don’t change the subject
If your friend wants to talk about how rotten they feel, let them. It may be distressing for you to hear some of the things they are saying, but if you can manage it then stay with them while they talk. If you find it too uncomfortable, and think you just can’t handle the conversation at that moment, then you should say so. Offer to try to discuss it again later. You can even say very simple and obvious things like ‘This is making me feel very uncomfortable at the moment – can we come back to it later?’ Do not change the subject without
acknowledging the fact that your friend has raised it.
9 Don’t give advice early
Ideally, you should not give advice unless it’s asked for. However, this isn’t an ideal world and quite often you might find yourself giving advice when you haven’t quite been asked. Try not to give advice early in the conversation, because it stops dialogue. If you’re bursting to give advice it’s often easier to use phrases like: ‘Have you thought about trying...’ or ‘A friend of mine once tried...’ Those are both less bold than ‘If I were you I’d...’, which makes your friend think (or even say) ‘but you’re not me’, which really is a conversation-stopper.
National Cancer Helpline 1800 200 700
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We all laugh most easily at the things we cope with least easily.>>>
If your friend wants to talk about how rotten they feel, let them.Understanding what your friend is facing
It may help you to try and understand something of what your friend is facing, and to see the fears that he or she may have. There are different aspects to any illness that can cause fear, and when the diagnosis is cancer, those fears may be more numerous and may loom larger. To help you encourage your friend to talk about her or his feelings, here are some of the commonest concerns:
The threat to health
When we are in good health, the threat of serious illness seems far away, and very few of us think about it before it happens. When it happens to us we are shocked and confused, and often angry or even bitter.
Uncertainty
A state of uncertainty may be even harder to bear than either good news or bad news. Similarly, ‘not knowing where you are and not knowing what to prepare for’ is a very painful state in itself. You can help your friend a lot by simply acknowledging the unpleasantness of uncertainty.
Not knowing about tests and treatments
Tests and treatment for cancer can often involve many different professionals, each with their own expertise. Very often the person with the cancer may feel unskilled and foolish. You can help by reinforcing the fact that nobody is ‘supposed’ to know all the details in advance.
Physical symptoms
This booklet focuses particularly on psychological problems, but of course physical symptoms are very important too. Your friend may, at various stages in the treatment, have a variety of symptoms (including pain or nausea for example). Allow them to talk about these
symptoms.
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To sum up
■ The aim of sensitive listening is to understand as completely as you can what the other person is feeling.
■ You can never achieve complete understanding but the closer you get, the better the communication between you and your friend will be.
How to help – a practical checklist
One of the most common problems in trying to help a person with cancer is that friends and relatives simply don’t know where to start. They want to help, but don’t know what to do first. In this section we outline a logical plan that you can follow. It will help you to decide where your help is most useful and where you can start.
Make your offer
You must first find out whether or not your help is wanted. If it is, make your offer. Your initial offer should be specific (not just ‘let me know what I can do’). You should say clearly that you will check back to see if there are things you can help with. Obviously, if you are the parent of a sick child or the spouse or partner of someone with cancer you don’t need to ask. However, in most circumstances, it is
important to know whether you’re in the right position to help. Sometimes a distant acquaintance or colleague is more welcome than a close relative; so don’t prejudge your usefulness. Do not be upset if your friend does not seem to want your support. Do not take it personally. If you are still keen to help, see if there are other family members who need assistance. After you have made the initial offer, do not wait to be called, but check back with some suggestions. You might be able to help indirectly by doing extra school runs or shopping for elderly relatives.
Become informed
If you are to be useful to your friend, you will need some information about what the medical situation is, but only enough to make sensible plans. You do not need to – and should not – become a world expert on the subject. Just find out enough about the illness so you can better understand your friend’s situation. Some people make
suggestions to the person with cancer about things they should do or treatments that they should try. This well-meaning advice can often put pressure on the person with the cancer and cause them stress. It is best to offer advice only if the person asks for it.
Visible signs of treatment or disease
The same is true of outward signs of cancer or its treatment, for example, hair loss due to chemotherapy or radiotherapy (to the head). You can help your friend feel less self-conscious, perhaps by helping them to choose a wig or scarf.
Social isolation
Most serious diseases, and particularly cancer, seem to put up an invisible barrier between the person who is ill and the rest of society. Visiting them and encouraging mutual friends to do the same is a good way of helping reduce that barrier.
The threat of death
Many people are cured of cancer, but the threat of dying is always there. It may continue to haunt people who are cured. You can’t get rid of that fear, but you can allow your friend to talk about it. By listening, you can reduce the impact and the pain of that threat. As always, you don’t have to have all the answers. Listening to the questions will help a lot.
Naturally this is only a partial list, but it will at least give you a glimpse of what may be going through your friend’s mind. All of these fears and concerns are normal and natural – what is ‘wrong’ or ‘unnatural’ is not having anybody to talk to about them. That’s why you can be so important to your friend.
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You don’t have to have all the answers. Listening to the questions will help a lot.>>>
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■ Could you house-sit, so that their partner can visit them in hospital? Could you take the children out for the day to give the couple some time together?
■ If you aren’t good at any of these things, would you be prepared to pay for, say, a cleaner for a half-day a week to help out? ■ Could you get relevant booklets for your friend?
■ Can you find DVDs that they like?
■ Do they need the furniture rearranged? (For instance, so that the person can sleep on the ground floor because they cannot manage stairs.) If so, could you help them to do it? ■ Will there be flowers at home when the person gets out of
hospital?
Assess the needs
This means assessing the needs of the person who is ill and of the rest of the family. Naturally, any assessment is going to be full of uncertainties because the future is often unpredictable, but you should try and think about the needs of the person who is ill. These will, of course, vary with the effect of the cancer at that time.
If the person has serious physical problems, here are some questions you might ask yourself:
■ Who is going to look after them during the day? ■ Can they get from the bed to the toilet?
■ Can they prepare their own meals?
■ Do they need medicines that they cannot take without help?
It is important to think of other family members.
■ Are there children who need to be taken to and from school? ■ Is the partner medically fit or are there things they need? ■ Is the home suitable for nursing someone with the person’s
medical condition or are there things that need to be done there?
Any list will be long and almost certainly incomplete, but it is a start. Check your list by going through a day in the life of your friend and thinking what they will need at each stage.
Decide what you can do and want to do
■ What are you good at?
■ Can you cook for your friend? Taking round pre-cooked frozen meals may be welcomed. Can you prepare meals for other family members?
■ Are you handy around the house? Could you put up handrails or wheelchair ramps if needed?
Start with small practical things
Look at the list of the things you are prepared to do, and perhaps start off by offering a few of them. Offering all of them may
overwhelm your friend. Pick some small tasks that are practical that your friend might not be able to do for him/herself easily. Offering to do a few small tasks and succeeding is far better than promising too much and failing. It may need a little thought and some inside knowledge.
For instance, one person, David, used to get his hair cut every week. It wasn’t a big thing, but it was part of his regular routine. When he was in hospital, his friend Peter arranged for the hospital barber to call weekly. It was a nice and thoughtful touch.
Avoid excesses
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news given. Don’t try and hide your feelings but remember you are the person who is giving support. Later you may find it helpful to talk to someone close to you, or one of the helpful organisations at the back of this booklet, for support for yourself.
Involve other people
Be fair to yourself and recognise your own limitations. Every helper and supporter wants to do his or her best. You may be very tempted to undertake heroic tasks, out of a sense of anger and rage against your friend’s situation and the injustice of it. But if you make heroic gestures and then fail, you will become part of the problem instead of helping with the solution. You owe it to yourself and to your friend to undertake reasonable tasks so that you succeed. This means you should always be realistic about what you can do. You can always get other people to help with the things you cannot do.
Going through this list in your mind is valuable because it offers a genuinely practical approach to something that is probably unfamiliar to you, and because it eases your own sense of pain at not knowing where to start. Whatever plans you make will certainly change with time as conditions change. Be prepared to be flexible and learn as you go along.
Conclusion
Of course it’s very frightening when someone close to you is told that they have cancer. But you can help in the ways we’ve talked about. Do remember that facts reduce fears. You can help your friend get the facts in perspective. By listening to what your friend is most concerned about and by helping them find the right information and understand it, you can be a vital part of your friend’s support system. And that is one of the most important things that one human being can do for another.
Listen
Time is a present you can always give. You can refer to page 7 for some guidelines on sensitive listening. Try to spend regular time with your friend. It’s better to try to spend 10 or 15 minutes once a day or every 2 days, if you can, rather than 2 hours once a month. Be reliable and be there for your friend.
Being with your friend at the clinic
People with cancer are often encouraged to take someone with them when they see the doctor for the first time or for follow-up visits. If your friend wants you to be there, you could offer to help them prepare for the appointment. Your friend may feel anxious when seeing the doctor, and this makes it difficult to think of the right questions to ask. The following suggestions may be useful:
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Time is a present you can always give.>>>
Listening and being there to support your friend may be the most important help you can give.■ Ask them to think about the questions that they want answered.
■ Help them to organise and write out their questions. ■ Suggest that they put their two or three most important
questions at the top of the list, as time may be limited.
During the appointment don’t try and speak on behalf of your friend, unless she or he asks you to. Remember it’s their questions that are important. Listen very carefully to the information and answers the doctor gives. It can also be helpful to take notes.
Support resources
Who else can help?
If your friend or relative is finding it hard to cope with their illness, help is at hand. Remember there are many people ready to help them and their family throughout treatment and afterwards.
Medical social worker:The medical social worker in the hospital can help in many ways throughout cancer treatment. He or she can give counselling, emotional support and assist with any practical concerns your friend or their family may have. They can also give advice on counselling and practical support available in your community. Cancer nurse specialists:Some of the major cancer treatment hospitals have oncology liaison nurses and cancer nurse coordinators. These specially trained nurses can support your friend or relative from the time of diagnosis and throughout treatment. These nurses along with other members of the medical team work together to meet your friend’s needs.
Psycho-oncology services:In some larger hospitals there are special units that provide psycho-oncology services. This means that your friend can receive psychological care and support during their diagnosis, treatment and recovery by a team of experts. Usually the team consists of psychiatrists, clinical psychologists and nurses working closely together.
Family doctor (GP):Your friend or relative may feel comfortable talking to their family doctor (GP) about their cancer too. He or she can discuss any of their queries and offer advice and support.
can provide advice and support. More information on the services is available from the medical social worker in the hospital before discharge or at the local health centre.
Cancer support groups and centres:Joining a support group can put your friend or relative in touch with people who have been in a similar situation. They can give practical advice about living with cancer. Cancer support centres and groups are found in most counties in Ireland and can offer a wide range of services. Some are listed at the back of this booklet. For more information visit
www.cancer.ie/how-we-can-helpor call the National Cancer Helpline on 1800 200 700.
Irish Cancer Society:The staff of the Cancer Information Service will be happy to discuss any concerns your relative or friend may have, at any stage of their illness. This can range from treatment information or practical advice about financial matters. For example, getting life insurance. Call the National Cancer Helpline on 1800 200 700 for information about any of the services outlined above or for support services in your area.
Irish Cancer Society services
The Irish Cancer Society funds a range of cancer support services that provide care and support for people with cancer at home and in hospital.
Cancer Information Service (CIS)
The Society provides a Cancer Information Service with a wide range of services. The National Cancer Helpline 1800 200 700 is a freefone service that gives confidential information, support and guidance to people concerned about cancer. It is staffed by specialist cancer nurses who have access to the most up-to-date facts on cancer-related issues. These include prevention of cancer, risk factors, screening, dealing with a cancer diagnosis, different treatments, counselling and other support services. The helpline can also put you in contact with the various support groups that are available. The helpline is open Monday to Thursday from 9am to 7pm, and every Friday from 9am to 5pm.
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The website www.cancer.ieprovides information on all aspects of cancer.■
All queries or concerns about cancer can be emailed to the CIS at [email protected]■
Message Boardis a discussion space on our website (www.cancer.ie) to share your stories, ideas and advice with others.■
The CancerChatservice is a live chatroom with a link to a Cancer Information Service nurse.■
The walk-in caller serviceallows anyone with concerns about cancer to freely visit the Society to discuss them in private.■
Find us on Facebookand follow us on Twitter(@IrishCancerSoc).Daffodil Centres
Daffodil Centres are located in a number of Irish hospitals. These have been set up by the Irish Cancer Society in partnership with each hospital and are an extension of the Cancer Information Service. They are generally found near the main entrance of the hospital and are open during the day. Staffed by a specialist nurse and trained volunteers, they provide a range of information, advice, help and support on all aspects of cancer, free of charge.
Daffodil Centres give you a chance to talk in confidence and be listened to and heard. If you are concerned about cancer, diagnosed with cancer or caring for someone with cancer, you are welcome to visit the centre. Do check to see if there is a Daffodil Centre in your hospital.
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Remember that there are many people ready to help you.■ Cancer Information Service (CIS)
■ Daffodil Centres
■ Cancer support services
■ Survivors Supporting Survivors
■ Counselling
■ Night nursing
■ Oncology liaison nurses
■ Cancer information booklets
■ Financial support
Cancer support services
The Irish Cancer Society funds a range of services set up to support you and your family at time of diagnosis, throughout treatment and afterwards. See page 32 for more details.
Survivors Supporting Survivors
Being diagnosed with cancer can be one of the hardest situations to face in your lifetime. Survivors Supporting Survivors is a one-to-one support programme run by the Irish Cancer Society. It provides peer support to people who have been diagnosed with cancer. It can give information, advice and emotional support from time of diagnosis and for as long as needed. All the volunteers have had a personal
experience of cancer and understand the emotional and physical impacts of the disease. They are carefully selected after recovery and are trained to provide information and reassurance. The service is provided on a one-to-one basis and is confidential. If you would like to make contact with a volunteer, please call the National Cancer
Helpline on 1800 200 700.
Counselling
Coping with a diagnosis of cancer can be very stressful at times. Sometimes it can be hard for your relative or friend and their family to come to terms with the illness. They might also find it difficult to talk to you or a close friend or relative. In this case, counselling can give emotional support in a safe and confidential environment. Call the helpline 1800 200 700 to find out about counselling services provided by the Irish Cancer Society and services available in your area.
Night nursing
The Society can provide a night nurse, free of charge, for up to 10 nights if your relative or friend needs end-of life care at home. The night nurse can also give practical support and reassurance to the family. You can find out more about this service from the GP, local public health nurse, a member of the homecare team or the palliative care services at the hospital. Homecare nurses can offer advice on pain control and managing other symptoms.
Oncology liaison nurses
The Society funds some oncology liaison nurses who can give you and your family information as well as emotional and practical support. Oncology liaison nurses work as part of the hospital team in specialist cancer centres.
Cancer information booklets and factsheets
Our booklets provide information on all aspects of cancer and its treatment, while our factsheets deal with very
specific topics. The booklets also offer practical advice on learning how to cope with your illness. The booklets and factsheets are available free of charge from the Irish
Cancer Society by calling 1800 200 700. They can
also be downloaded from www.cancer.ie or picked up at a Daffodil Centre.
Financial support
A diagnosis of cancer can bring with it the added burden of financial worries. In certain circumstances, the Irish Cancer Society may be able to provide limited financial help to patients in need. Your friend or relative may be suitable for schemes such as Travel2Care or Financial Aid.
Travel2Care:Travel2Care can help with travel costs if your friend has genuine financial hardship due to travelling over 50 kilometres to a rapid access diagnostic clinic for tests or to a designated cancer centre or approved satellite centre for cancer treatment. The scheme is funded by the National Cancer Control Programme (NCCP) and managed by the Irish Cancer Society. Travel2Care can help with some of the costs of public transport, such as trains or buses, private transport costs, or petrol expenses.
If your friend or relative would like to request this kind of help, they should contact the medical social work department in their hospital or speak to their cancer care nurse. They can also contact the Irish Cancer Society on (01) 231 6643 / 231 6619 or email:
Financial Aid:A special fund has been created to help families in financial hardship when faced with a cancer diagnosis. For this kind of help, your friend or relative should contact the medical social work department in their hospital. They can also speak to their cancer care nurse or contact the Irish Cancer Society at (01) 231 6619.
Care to Drive transport project
Care to Drive is a scheme operated by the Irish Cancer Society. It provides free transport for patients to and from their treatments using volunteer drivers. All of the volunteers are carefully selected, vetted and trained. The patient is collected from their home, driven to their appointment and brought back home again. Call (01) 231 0522 for more information.
Irish Cancer Society
43/45 Northumberland Road Dublin 4
Tel: 01 231 0500
National Cancer Helpline: 1800 200 700
Email: [email protected] Website: www.cancer.ie
The Carers Association
Market Square Tullamore Co Offaly
Freefone: 1800 240 724 Email: [email protected]
Citizens Information
Tel: 0761 07 4000
Email: [email protected] Website: www.citizensinformation.ie
Get Ireland Active: Promoting Physical Activity in Ireland
Website: www.getirelandactive.ie
Health Promotion HSE
Website: www.healthpromotion.ie
All Ireland Co-operative Oncology Research Group
Website: www.icorg.ie
Irish Nutrition & Dietetic Institute
Ashgrove House Kill Avenue Dún Laoghaire Co Dublin Tel: 01 280 4839 Email: [email protected] Website: www.indi.ie
Irish Oncology and Haematology Social Workers Group
Website: http://socialworkandcancer.com
Money Advice and Budgeting Service (MABS)
Commercial House
Westend Commercial Village Blanchardstown
Dublin 15 Tel: 01 812 9350 Helpline 0761 07 2000 Email: [email protected] Website: www.mabs.ie
Health insurers
AVIVA Health
PO Box 764 Togher Cork
Tel: 1850 717 717 Email: [email protected] Website: www.avivahealth.ie
GloHealth
PO Box 12218 Dublin 18 Tel: 1890 781 781
Email: [email protected] Website: www.glohealth.ie
Laya Healthcare
Eastgate Road Eastgate Business Park Little Island
Co Cork
Tel: 021 202 2000 LoCall: 1890 700 890 Email: [email protected] Website: www.layahealthcare.ie
Voluntary Health Insurance (VHI)
IDA Business Park Purcellsinch Dublin Road Kilkenny
CallSave: 1850 44 44 44 Email: [email protected] Website: www.vhi.ie
If you would like more information on any of the above services, call the National Cancer Helpline on 1800 200 700.
National support services
Survivors Supporting Survivors
Irish Cancer Society
43/45 Northumberland Road Dublin 4
Freefone: 1800 200 700 Email: [email protected] Website: www.cancer.ie
ARC Cancer Support Centres Dublin
[See page 33]
Canteen Ireland
[Teenage cancer support] Carmichael Centre North Brunswick Street Dublin 7
Tel: 01 872 2012 Email: [email protected] Website: www.canteen.ie
Cancer Support Sanctuary LARCC
[See page 33]
Connaught support
services
Athenry Cancer Care
Social Service Centre New Line
Athenry Co Galway
Tel: 091 844 319 / 087 412 8080 Email: [email protected] Website: www.athenrycancercare.com
Ballinasloe Cancer Support Centre
Main Street Ballinasloe Co Galway Tel: 090 964 5574
Email: [email protected]
Cara Iorrais Cancer Support Centre
2 Church Street Belmullet Co Mayo
Tel: 097 20590 / 087 391 8573 Email: [email protected]
Tuam Cancer Care Centre
Cricket Court Dunmore Road Tuam
Co Galway Tel: 093 28522
Email: [email protected] Website: www.tuamcancercare.ie
Leinster support services
Aoibheann’s Pink Tie
[Supporting children with cancer] Unit 22
Docklands Innovation Centre 128–130 East Wall Road Dublin 3
Tel: 01 240 1300 Email:
ARC Cancer Support Centre
ARC House 65 Eccles Street Dublin 7 Tel: 01 830 7333
Email: [email protected] Website: www.arccancersupport.ie
ARC Cancer Support Centre
ARC House
559 South Circular Road Dublin 8
Tel: 01 707 8880
Email: [email protected] Website: www.arccancersupport.ie
Arklow Cancer Support Group
25 Kings Hill Arklow Co Wicklow
Tel: 0402 23590 / 085 110 0066 Email: [email protected] Website: www.arklowcancersupport.com
Balbriggan Cancer Support Group
Unit 23, Balbriggan Business Park Harry Reynold’s Road
Balbriggan Co Dublin
Tel: 087 353 2872 / 086 164 2234
East Galway and Midlands Cancer Support
Brackernagh Ballinasloe Co Galway
Tel: 090 964 2088 / 087 984 0304 Email: [email protected] Website: www.egmcancersupport.com
Galway Brain Tumour Support Group
Tel: 087 783 4826 (Anne Buckley)
Gort Cancer Support Group
Garrabeg Gort Co Galway
Tel: 091 648 606 / 086 172 4500 Email: [email protected] Website: www.gortcancersupport.ie
Hand in Hand
[Childhood cancer in west and northwest] Oranmore Business Park
Oranmore Co Galway Tel: 091 799 759
Email: [email protected] Website: www.handinhand.ie
Mayo Cancer Support Association
Rock Rose House 32 St Patrick’s Avenue Castlebar
Co Mayo Tel: 094 903 8407 Email: [email protected] Website: www.mayocancer.ie
Roscommon Cancer Support Group
Vita House Family Centre Abbey Street
Roscommon Tel: 090 662 5898 Email: [email protected]
Sligo Cancer Support Centre
44 Wine Street Sligo
Tel: 071 917 0399 Email: [email protected]
Website: www.sligocancersupportcentre.ie
Brain Tumour Support Group
Medical Social Work Department St Luke’s Hospital
Highfield Road Rathgar Dublin 6 Tel: 01 406 5163 Email: [email protected]
The Bella Rose Foundation
Merry Maid House West Park Campus Garter’s Lane Citywest Dublin 24 Tel: 087 320 3201
Email: [email protected] Website: www.bellarose.ie
Bray Cancer Support & Information Centre
Aubrey Court Parnell Road Bray Co Wicklow Tel: 01 286 6966
Email: [email protected] Website: www.braycancersupport.ie
Cancer Support Sanctuary LARCC
Coole Road Multyfarnham Mullingar Co Westmeath Tel: 044 937 1971 CallSave: 1850 719 719 Email: [email protected] Website: www.cancersupport.ie
Cara Cancer Support Centre
7 Williamson's Place Dundalk
Co Louth
Tel: 042 937 4905 / Mobile: 087 395 5335 Email: [email protected]
Website: ccscdundalk.ie
Cois Nore Cancer Support Centre
8 Walkin Street Kilkenny Tel: 056 775 2222
Kerry Cancer Support Group
124 Tralee Town House Apartments Maine Street
Tralee Co Kerry
Tel: 066 719 5560 / 087 230 8734 Email:
[email protected] Website: www.kerrycancersupport.com
Recovery Haven
5 Haig’s Terrace Tralee Co Kerry Tel: 066 719 2122
Email: [email protected] Website: www.recoveryhavenkerry.com
Sláinte an Chláir: Clare Cancer Support
Tír Mhuire Kilnamona Ennis Co Clare
Tel: 1850 211 630 / 087 691 2396 Email: [email protected] Website: www.clarecancersupport.com
South Eastern Cancer Foundation
Solas Centre Williamstown Waterford Tel: 051 304 604 Email: [email protected] Website: www.solascentre.ie
Suaimhneas Cancer Support Centre
2 Clonaslee Gortland Roe Nenagh Co Tipperary Tel: 067 37403 Email:
Suir Haven Cancer Support Centre
Clongour Road Thurles Co Tipperary Tel: 0504 21197
Email: [email protected]
Cuisle Cancer Support Centre
Block Road Portlaoise Co Laois Tel: 057 868 1492
Email: [email protected] Website: www.cuislecentre.com
Dóchas: Offaly Cancer Support Group
Teach Dóchas Offaly Street Tullamore Co Offaly Tel: 057 932 8268
Email: [email protected] Website: www.dochasoffaly.ie
Éist Carlow Cancer Support Centre
The Waterfront Mill Lane Carlow
Tel: 059 913 9684 Mobile: 085 144 0510
Email: [email protected] Website: www.eistcarlowcancersupport.ie
Gary Kelly Cancer Support Centre
George’s Street Drogheda Co Louth Tel: 041 980 5100
Email: [email protected] Website: www.gkcancersupport.com
Greystones Cancer Support
La Touche Place Greystones Co Wicklow Tel: 01 287 1601
Email: [email protected] Website:
www.greystonescancersupport.com
Hope Cancer Support Centre
22 Weafer Street Enniscorthy Co Wexford Tel: 053 923 8555
Email: [email protected] Website: www.hopesupportcentre.ie
Rathdrum Cancer Support Centre
St Anne’s Lower Street Rathdrum Co Wicklow Tel: 087 292 8660 Email: [email protected]
Tallaght Cancer Support Group
Trustus House 1–2 Main Street Tallaght Dublin 24 Tel: 086 400 2736 Email: [email protected]
Website: tallaghtcancersupport.com
Wicklow Cancer Support Centre
1 Morton’s Lane Wicklow Tel: 0404 32696
Email: [email protected]
Munster support services
Cancer Information & Support Centre
Mid-Western Regional Hospital Dooradoyle
Co Limerick Tel: 061 485 163
Website: www.midwesterncancercentre.ie
CARE Cancer Support Centre
14 Wellington Street Clonmel
Co Tipperary Tel: 052 618 2667
Email: [email protected] Website: www.cancercare.ie
Cork ARC Cancer Support House
Cliffdale
5 O’Donovan Rossa Road Cork
Tel: 021 427 6688
Email: [email protected] Website: www.corkcancersupport.ie
Youghal Cancer Support Group
161 North Main Street Youghal
Co Cork Tel: 024 92353 Email:
Ulster support services
Cancer Support and Social Club
Tiernaleague Carndonagh Co Donegal
Tel: 086 602 8993 / 087 763 4596
Coiste Scaoil Saor ó Ailse
C/O Ionad Niomh Padraig Upper Dore
Bunbeg Letterkenny Co Donegal Tel: 074 953 2949
Email: [email protected] Website: www.scaoilsaor.ie
Crocus: Monaghan Cancer Support Centre
The Wellness Centre 19 The Grange Plantation Walk Monaghan
Tel: 087 368 0965 / 047 62565 Email: [email protected]
Cuan Cancer Social Support and Wellness Group
2nd Floor, Cootehill Credit Union 22–24 Market Street
Cootehill Co Cavan Tel: 086 455 6632
The Forge Cancer Support Service
The Forge Family Resource Centre Pettigo
Co Donegal Tel: 071 986 1924
Helpful books
Living Beyond Cancer
Oncology Day Services Letterkenny General Hospital Letterkenny
Co Donegal
Tel: 074 912 5888 (Bleep 674/734) / 074 910 4477
Email: [email protected]
Other support services
Cancer Care West
72 Seamus Quirke Road Galway
Tel: 091 545 000
Email: [email protected] Website: www.cancercarewest.ie
Cúnamh: Bons Secours Cancer Support Group
Bon Secours Hospital College Road Cork
Tel: 021 480 1676 Website: www.cunamh.ie
Dundalk Cancer Support Group
Philipstown Hackballscross Dundalk Co Louth Tel: 086 107 4257
Killybegs Cancer Support Group
Kille Kilcar Co Donegal Tel: 074 973 1292
Email: [email protected]
Newbridge Cancer Support Group
Tel: 083 360 9898 Email:
Solace: Donegal Cancer Support Centre
St Joseph’s Avenue Donegal Town Tel: 074 974 0837
Email: [email protected]
Useful contacts outside
Republic of Ireland
Action Cancer
Action Cancer House 1 Marlborough Park Belfast BT9 6XS Tel: 028 9080 3344
Email: [email protected] Website: www.actioncancer.org
American Cancer Society
Website: www.cancer.org
Cancer Focus Northern Ireland
40–44 Eglantine Avenue Belfast BT9 6DX Tel: 048 9066 3281
Email: [email protected] Website: www.cancerfocusni.org
Cancer Network Buddies
Website: www.cancerbuddiesnetwork.org
Cancer Research UK
Tel: 0044 20 7242 0200
Website: www.cancerhelp.org.uk
Healthtalkonline
Website: www.healthtalkonline.org
Macmillan Cancer Support (UK)
Tel: 0044 20 7840 7840
Email: [email protected] Website: www.macmillan.org.uk
Macmillan Support & Information Centre
Belfast City Hospital Trust 77–81 Lisburn Road Belfast BT9 7AB Tel: 028 9069 9202
Email: [email protected] Website: www.cancerni.net
National Cancer Institute (US)
Website: www.nci.nih.gov
Taking Control of Cancer
Beverley van der Molen Class Publishing, 2003 ISBN 1859590918
The Bristol Approach to Living with Cancer
Helen Cooke Robinson, 2003 ISBN 1841196800
What You Really Need to Know about Cancer
Dr Robert Buckman Pan, 1997
ISBN 0330336282
For other support services in your area, call 1800 200 700.
Cancer at Your Fingertips(2nd edn) Val Speechley & Maxine Rosenfeld Class Publishing, 2001
ISBN 1859590365
Cancer Positive: The Role of the Mind in Tackling Cancers
Dr James Colthurst Michael O’Mara Books, 2003 ISBN 185479860X
The Cancer Survivor’s Companion
Dr Frances Goodhart & Lucy Atkins
Piatkus, 2013 ISBN: 0749954906
Challenging Cancer: Fighting Back, Taking Control, Finding Options
(2nd edn) Maurice Slevin & Nira Kfir Class Publishing, 2002
ISBN 1859590683
Free booklets from the Irish Cancer Society:
■ Coping with Fatigue
■ Understanding the Emotional Effects of Cancer
■ Understanding Cancer and Complementary Therapies
■ A Time to Care: Caring for Someone Seriously Ill at Home
■ Who Can Ever Understand? Taking About Your Cancer
■ Talking to Children about Cancer: A Guide for Parents
■ Managing the Financial Impact of Cancer: A Guide for Patients and Their Families
■ Journey Journal: Keeping Track of Your Cancer Treatment
For more details on helpful and up-to-date books and their availability,
Notes
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Notes
Acknowledgements
We would like to extend a special word of thanks to the following for their invaluable contributions to this booklet and/or previous editions: Aoife McNamara, Cancer Information Nurse
Marie Cox, Oncology Liaison Nurse Dr Malcolm Garland, Liaison Psychologist Peter Kennedy, Medical Social Worker Nicki Martin, Medical Social Worker Noeleen Sheridan, Oncology Liaison Nurse Rory Wilkinson, Practice Development Nurse Susan Rowan, Patient Education Editor Antoinette Walker, Patient Education Editor
Would you like more information?
We hope this booklet has been of help to you. If you feel you would like more information or someone to talk to, please call our National Cancer Helpline on 1800 200 700.
Would you like to help us?
The Irish Cancer Society relies entirely on voluntary contributions from the public to fund its programmes of patient care, education and research. If you would like to support our work in any way – perhaps by making a donation or by organising a local fundraising event – please contact us at CallSave 1850 60 60 60 or email [email protected].
Irish Cancer Society, 43/45 Northumberland Road, Dublin 4. Tel:01 231 0500Email: [email protected] Website:www.cancer.ie
Would you like to be a patient reviewer?
If you have any suggestions as to how this booklet could be improved, we would be delighted to hear from you. The views of
patients, relatives, carers and friends are all welcome. Your comments would help us greatly in the preparation of future information booklets for people with cancer and their carers.
If you wish to email your comments, have an idea for a new booklet or would like to review any of our booklets, please contact us at
43/45 Northumberland Road, Dublin 4 T: 01 231 0500
E: [email protected] W: www.cancer.ie
National Cancer Helpline Freefone 1800 200 700 Open Monday to Thursday 9am to 7pm
Friday 9am to 5pm Find us on Facebook
